Part of the reason I have been so quiet lately is that I am so exhausted of the fight that goes hand in hand with trying to source the appropriate care in this country. I have spoken to many others in the same position, and I know for a fact that I am far from the only one to feel like giving up – so here you go, lets talk.
I have suffered from plain old PTSD for over 12 years. I am familiar with the panic attacks, the dissociation and the avoidance. I have made my peace with it for the most part – I know that the dissociation, however impractical, is there to protect me when things get too overwhelming, and for the most part I am now in control of my triggers. Of course I would rather not have it at all, but compared to a few years ago, the effects on my day-to-day life are minimal. I mention this because it’s from direct experience that I can say that those same feelings and reactions are now linked with a new trigger for me – that trigger is medicine.
Something as small as going to the GP now sends me into overdrive. I am so fearful that I will get the same old reactions that are so common for patients with EDS. The doubt, the way you are looked at like some sort of mental case and the arrogance that comes with talking over a patient and simply refusing to listen. When I go to the doctor, I know it is a million times more likely that I will be told that non of these conditions exist, or that they are far too rare for someone like me to have then for a doctor to actually accept that I am ill. They will sit and talk over my head to the other person I have with me rather then make eye contact and discuss things with the 30 year old woman in front of them – and this is far more damaging then I can express. I am made to feel sub-human. I am made to feel stupid, and attention seeking and small. Worse still I am now so disheartened that I spent over a year sitting with new and worsening symptoms without seeking further help.
This systemic neglect cuts deep into the minds of someone with a ‘rare’ or chronic illness. To belittle a patient to the extent that they can no longer seek medical care seems outrageous, but it appears to be a very common occurrence. I know so many others who now avoid medical intervention completely. We simply don’t have the energy to keep fighting any more.
Recently I had to change GP surgery. It took 4 years of neglected referrals and wasted appointments to push me to a point where I had no choice, but what surprised me in this was that my reluctance to change was simple: there was no guarantee any doctor would be any better, and I couldn’t face the idea of going through everything again, getting my hopes up, and then being shot down once more. The more that this happens, the worse it feels. I may have been strong once upon a time, but these days I have no energy left to withstand another onslaught.
Finally after 4 more referrals being refused (all whilst being told they had been done repeatedly) through 3 GPs at that surgery, I made a move. These referrals were important ones. One was for breast screening that should have been made 6 months before my 30th – and seeing as dad has had related cancer twice, and mum is now going though treatment for breast cancer, I really don’t want to ignore the 85% lifetime chance that I carry with the BRCA2 gene mutation I have. Another was for a scan of my spine after one leg went completely numb for 6 months for no apparent reason. I have also had several occasions of short term numbness/paralysis of both legs (thankfully only lasting a couple of hours each time) and to date, although the GPs suggested a scan of my spine, no referral has ever been made. I now have limited feeling in one leg and it is comparably very weak to the leg on my other side. The third referral was to the CMHT after my depression got unmanageable over the summer – the GP openly admitted I had scared her with how low I got this time round, yet although she repeatedly told me that this referral was in the pipeline, again it was never made. Finally, I was told that the horrific vertigo like dizziness I get, and the issues with loss of sensation I get are things that she would not treat unless I was under the care of a neurologist. She suggested a referral to Neurology was needed, and supposedly this had been made back in September. Sadly yet again, this was never made, and worse still I had been strung along for months awaiting for referrals to come through that never would. Each of these referrals were suggested by the GP. I did not push for them, I didn’t ask for them. So why lie about doing them?!
Each and every time issues like this happen, a little more of my resolve dies alongside it. It is almost impossible to keep on pushing when every appointment is at best a waste of time, and at worst a personal attack.
I am exhausted of fighting, of proving, and of undergoing frankly unpleasant medical tests only for the results to be dismissed once conditions are picked up on. I am tired of trying to fight for the care that people with more common conditions get given automatically. I am just so tired.
Flipping back PTSD, it truly surprises me just how many PTSD symptoms are now cropping up whenever I need to make contact with a doctor. My first appointment with the new GP felt horrific. I had been dissociating all day, and the nearer It got to my appointment time the more I started to panic. My heart was racing, my breathing shallowed, I was physically visibly shaking, and by the time I had to go I was terrified. “What if no one believes me? What if he makes me feel like I’m attention seeking? What if, what if, what if.” I found it extremely hard to talk to him, and although I brought a stack of hospital letters with me (as proof I wasn’t making things up), I found it very difficult to know what to say. Although he was surprisingly nice about things, I came away shaking at home for a further 2 hours after that appointment.
So far, he hasn’t been as bad as my last GP, but there is so much trust gone that I am still finding it extremely difficult to build up enough energy/courage to make further appointments. So much has been neglected in the past that I feel terrified that continued appointments will only make him think I am making the whole thing up. I am living with numerous symptoms left unmanaged, pain that is uncontrolled and fatigue worse than its ever been. I have ongoing issues with depression that frankly I have avoided bringing to medical attention due to the persistent idea that its the mental ill health that causes symptoms rather then the reality which is that you get depressed because your symptoms have dismantled your life one ability at a time. Of course you would be depressed if your body is so unpredictable. I have gone from being able to dance for 16 hours a week alongside a full time degree to barely managing 2 hours sat up before I am exhausted in just 5 years. I am wobbly, I am in pain, I am unable to manage basic self care without assistance. Who wouldn’t be depressed?! Yet I can’t discuss this with medical professionals for fear that they automatically then write off all other symptoms as psychosomatic.
It shouldn’t be like this. We shouldn’t be terrified of making a doctors appointment or attending a hospital appointment. We shouldn’t be scared of being honest about how low we feel due to the situation we find ourselves in. Non of this should be happening to any of us. EDS is not a mental illness, but managing the neglect we are faced with often causes either depression, anxiety or PTSD.
For those on the outside looking in, it is a frustrating situation to observe. I know that for those 4 years that I didn’t have the guts to face my fears and move frustrated many around me. I couldn’t explain to people why I couldn’t move surgery, or why I was ignoring symptoms. If you are a friend or loved one of another Zebra, please understand that this is not a sign of someone not helping them selves. Be there for them, talk to them and most importantly listen. Support could make all the difference in weather someone feels strong enough to face another battle – we can’t always do this alone. For any stripy people out there, you are not alone – we may not always be vocal about it, but you are certainly not on your own. Fear is a nasty business, and I hope that one day this situation changes. In the mean time I will be continuing my push for help, and perhaps one day, going to the GP will feel just like it should for anyone.